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 Recently Diagnosed with IIH 34yrs male from India.

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yashwinder Insan
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PostSubject: Recently Diagnosed with IIH 34yrs male from India.    Tue Sep 17, 2013 11:44 am

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Dear Forum Members

I am Yashwinder, 34years old male from New Delhi, India. 

I experienced some vision issues in my right eye when position change, a cloud formation which disappears within less than 10 seconds it was in 2012, I went to eye hospital, doctor checked pressure etc and wrongly diagnosed that its due to weakness. 

Lately in 2012 during winters symptoms gone off ( i guess remission phase)


2013 April onwards I started feeling a lot of fatigue, my head starts boiling in evening, eventually goes to bed very early thinking its work pressure. later in Month of July I started aerobics, and suddenly the symptoms gets worse with my eye. 

In August 13 the Right eye the vision while changing the position was tunnel view, (with complete black covering and disintegrates within less than 10 seconds)and with this I went to Eye specialist, who said its problem with brain. CT scan came normal, he further said its Pseudo Tumor and gave me Steroids 40mg Predenisolone ....which i continued for a week, after a week he said papilloedema in left eye is reduced but right eye (eye with symptoms) not much change ....though those tunnel view symptoms gone with medicine. He continued steroids for another week. 

I took second opinion, and this eye specialist referred me to neuro expert. 

Neuro took all long sessions and after  MRI , MRV, few other tests, last told Lumbar puncture. which I underwent on 6th Sept 2013. Thus confirmed its IIH pressure is higher side 54 (i guess not sure)

He further said he is putting me on Diamox 750mg (per day) and everyweek I have to come for eye checkup to see condition of papilloedema. He said mostly its controlled by Diamox (if it works) rest steroids is another option. He briefly explained Shunt surgery but said its too early to discuss it, hopefully medicine will control it. 

at present I am on diamox since 5th Sept 2013 (today is 16th Spet 2013), I feel slight pain in head ( it was never earlier) last week I went for checkup, he said marginal change (though he wasnt sure) in papilloedema. 

I never had any severe headaches, but after lumbar and say last 1, 2months have this heavy head feeling, slight pain kind of feeling. 

This is all about my story so far with IIH, Its good be part of this forum, as in India, per say awareness and understanding of the concerns is still a challenge. 

Hoping to hear some useful info from members.
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Wylee
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Sun Nov 03, 2013 5:10 pm

Great report Yashwinder.  I hope that you continue to get good results using just the meds and will not have to even consider any type of surgery.

Because Diamox is a diuretic, it can flush the body of much needed minerals.  My docs check my blood electrolytes every 3 to 4 months, checking to make sure the levels are "normal."  I do take a prescribed dose of potassium which does keep that at a good level.  Eating foods rich in potassium, like bananas and some veggies can help too.

Here is a link to Lab Tests Online, which is a really good source of info:

[You must be registered and logged in to see this link.]

It explains the electrolyte panel test.
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medmisfit
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Tue Nov 05, 2013 4:06 pm

I would check IIH and Medication section for side effects. Many members have posted information regarding issues and successes. It's important to remember that everyone responds differently. I would suggest keeping a symptom log to help you keep track of any changes. It gives the doctors more information too.
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yashwinder Insan
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Sat Nov 30, 2013 2:48 pm

I am back, after a long break, symptoms (usual IIH) are much improved with Diamox 2000mg. Pap is almost 50% reduced in right eye (severely affected) and left eye no pap Smile


My Neuro, cut my dose to 1000mg in a day today, just wondering and skeptical too, if the symptoms come back :(

Not sure what to do, Neuro said 2000mg he cannot allow to continue for long time, but i guess weaning  started in advance !
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medmisfit
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Mon Dec 02, 2013 8:51 pm

I'm glad to hear you've had improvement! You can always call the doctor if you notice changes in your symptoms, but hopefully the maintenance dose will work for you..good luck!!
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Wylee
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Mon Dec 02, 2013 11:42 pm

Yashwinder, I tried to use google to see what is recommended on long term use of Diamox, especially since I have been on it since Aug 2010.  It seems that the reason given for not using it as a long term alternative is only because it has a tendency to require the use of dose increases in order to maintain the same level of relief.  I have heard of that myself.  I know a few people who have had to keep increasing their daily dose in order to keep the symptoms at bay.  It is NOT medically unsafe to keep taking it, even at the higher doses.  The important thing to do, is to have your blood checked regularly, many times a year, to make sure that you are not becoming deficient in anything due to using Diamox.  I would highly recommend doing some research yourself and even making copies to bring to your doctor, in case your symptoms do start to come back, which is a very real possibility.  
Hope you are keeping a daily log of any and all changes you are going through.  Most of all I wish you good luck and just maybe you will be able to cut back on your dose and not be affected.
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yashwinder Insan
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Tue Dec 03, 2013 3:00 pm

Well, barely within few hours of reduced dose (250mg instead of 500mg) and 1 grams in a day instead of 2 grams, I started feeling symptoms and at sudden. I took reduced dose for 24 hours, and next morning 5am Dose, I could not resist to take full Diamox i.e. 500mg in one go.

My Neuro, gave his personal number, and i called him, narrated him whole story, and he said, Go Back On your regular dose, we need to give some more time on regular dose.
Since Monday I am back on 2000mg a day, and feeling ok ok types.

The Sunday with onset of sudden symptoms were crazy, in morning it was heavy head feeling, within hours, i could feel throbbing pain e.g. when while driving car crossed speed breaker , i could feel a pain. within 8 hours i started feeling pain and burning sensation behind eyes, and during night i was all drowsy, i guess not blur but glow (like soft glow photo) vision.

Morning I woke up with heavy head, loud tinnitus and ....... rushed back to my full dose myself later advocated by Neuro too.

Regarding blood tests, potassium and sodium levels are well within limits, I am little worried about 'aplastic anemia' it rare but one of the side effects of DIamox. .....can anyone please put some light on it?

and

what tests I should go for it, as why I am suspecting, I am feeling a lot of restlessness, breath while doing little work....
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medmisfit
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Tue Dec 03, 2013 5:22 pm

I think it's important to remember that even if 1 person exhibits a symptom during a trial they have to record it as a "side effect" whether it's related to the medication or not. Diamox helps flush fluid out of your system, so things like potassium and iron tend to go with it. It sounds like they're monitoring your levels, so just keep them informed of any changes. I had horrible weakness and tingling with Diamox, so couldn't tolerate it. Other members have found they eventually get used to the side effects. Everyone is different, so I recommend being diligent with your log and keeping doctors informed.
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Wylee
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Tue Dec 03, 2013 11:54 pm

Yashwinder, here is what the Mayo Clinic says about aplastic anemia:

Risk factors
By Mayo Clinic staff
Aplastic anemia is rare. Factors that may increase your risk include:

  • Treatment with high-dose radiation or chemotherapy for cancer
  • Exposure to toxic chemicals
  • The use of some prescription drugs — such as chloramphenicol, which is used to treat bacterial infections, and gold compounds used to treat rheumatoid arthritis
  • Certain blood diseases, autoimmune disorders and serious infections
  • Pregnancy, rarely
Preparing for your appointment
I don't think you need to worry about this one unless you have other medical conditions, but I thought I read you said you had been very healthy.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Wed Dec 04, 2013 2:20 am

Hi Yash, I was taking 1500m per day, started on 500g, then 750, 1000, and eventually 1500mg per day. The diamox didnt work at all for me. When I started using it I had pins and needles regular, 5/6 times a day. Towards the end, I never got the pins and needles and almost felt myself that is was pointless taking it as I knew it was not working anymore. It's trial and error I guess, only you knows how your body is working and what is affecting it. I sometimes got the impression that the doctors seem to judge every case the same and it's not. Hope this helps m8. Keep strong.
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yashwinder Insan
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Wed Jan 08, 2014 5:32 am

Happy New Year to All my forum members... Wish u a prosperous and pain free new year Smile 

I was out on long vacations, as most of symptoms gone with Diamox, papillodema is reduced further too. 

However I am facing again issues with my Diamox, CBC blood test shows decrease in Hb (eg Sept 13 it was 15.9g/ml and on 7 Jan 14 its 14 g/ml 

Neuro suspecting something and he said always insisting on weaning of diamox. ( i am told to STOP diamox)

Dont know what to do now!!!
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Wylee
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Wed Jan 08, 2014 5:08 pm

Happy New Year to you too!
I looked up Hb, the measurement of hemoglobin found in one's blood.  According to Wikipedia, the normal values are:

  • Men: 13.8 to 18.0 g/dL (138 to 180 g/L, or 8.56 to 11.17 mmol/L).




It appears that your readings are still within the normal range.  I would suggest you speak to your doctor about the possibility of supplementing your diet with natural (or not) sources of iron to see if that may help bring your numbers back up.  Since you are getting relief from the Diamox, I would hate to see you left with nothing to replace it.  There are other diuretics you could try, if you have to, but I am with you on this one.  As long as your docs are closely watching you, you are getting relief from the Diamox, and your numbers are still "normal", I would hold out on stopping the Diamox.
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yashwinder Insan
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Thu Jan 09, 2014 5:25 am

Thanks for warm response!

But only concern is that i never had Hb less than 15.9g in my life so far, and now its 14.2 only merely few points away from minimum limit. 

Isnt it an alarming situation? with few months of diamox it is down significantly, and aplastic anemia is more dangerous than IIH. 

I am in lost stange, dont know what to do, my Neuro already insisting to stop Diamox since Nov 12, lets see. 

could you please provide some more info on aplastic anemia and diamox? is it treatble? etc
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medmisfit
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Thu Jan 09, 2014 6:25 pm

Aplastic Anemia is a rare side effect of Diamox and other similar meds...they basically flush your system of fluids, which includes the good stuff. There are other options (Topamax, Lasix, Octreocide, etc), but I'm not sure how they'd affect Aplastic Anemia. I wonder if you have a predisposition for it, since they tested you..from what I've read it's very rare for anyone to even look for it. There are some posts about other meds in "IIH and Medication" section, but everything affects everyone differently and you'll eventually just want to talk to your doctor about the benefits and risks in relation to the anemia.

Good luck!
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Sat Jan 11, 2014 6:23 pm

hi Yash;
wow, I would not be worried about aplastic anemia with a Hgb of 14!  you are in normal range and other things may account for this.  for example, I always had a higher Hgb for a woman.  since my jaw surgery, it's been more like what  you might expect for a woman, 2 points lower at least.  hypoxia which may occur with sleep apnea can trigger your body to increase red cell mass to increase oxygen carrying capacity as a compensation.  maybe something else changed in your body, but aplastic anemia would not be on my list unless you start dropping below normal or your reticulocyte count is below normal or you have a bone marrow biopsy that demonstrates this finding.  sulfa drugs in general can decrease production of bone marrow cells, but in most cases it is a mild decrease and not a catastrophic event.  I would ask for a reticulocyte count and if normal I would just follow this closely.  you are a rarity here: someone who actually feels better with Diamox!!!

(a reticulocyte is a young red blood cell and a measure of how much red cells the bone marrow is making.  if it's normal it means your marrow is producing adequately)
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yashwinder Insan
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Mon Jan 13, 2014 4:50 am

Thanks ..... bit relaxed. 

Even my Neuro, said similar thing, and told me to continue with reduced dose of 1 gram, since last wednesday I am on 1 gram .... its so far normal, atleast tingling has reduced greatly. 

However since yesterday, I suspect some thing different like, pulsating eye, or vision (very mild) 

Lets see , I will update soon.
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Wylee
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Mon Jan 13, 2014 5:23 am

Do keep a close watch on your eyesight!  That should be priority one!!  I hope you are keeping a daily log of your symptoms.  This type of info will be very helpful for your docs.

Deb, thanks for for thorough explanation.  I tried reading up about it, but, it's beyond my brain's scope  Smile
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